What every fibro warrior needs to know about Lyme disease

Before diagnosing you with fibromyalgia, your doctor may have tested you for Lyme disease, a bacterial infection frequently transmitted by ticks. If you received a negative test result, he or she likely crossed Lyme off their mental list of potential causes for your symptoms and moved on to ruling out other conditions.

But what many doctors don’t realize is the standard testing for Lyme disease is only 50-60 percent accurate. That means you could still have Lyme even if you’ve tested negative for it!

Last summer, I learned this lesson firsthand when I found out I have Lyme. I had been diagnosed with fibromyalgia in 2014. At the time, my rheumatologist ruled out all the typical culprits of my symptoms, including Lyme. In fact, I was tested at least twice for Lyme through Labcorp, and both times my tests came back negative.

Two years after my fibro diagnosis, I learned about the high rate of false negatives in Lyme testing. I’d always had this nagging feeling that my doctors were missing something. My symptoms didn’t improve with the typical fibromyalgia treatments, and I was desperate to find relief from the continual pain, fatigue and other symptoms that I live with on a daily basis.

Having grown up in rural Virginia, I had a history of tick bites, so it made sense to me that I might have contracted Lyme. I decided to have iGenex testing, which is more accurate than the testing available through Labcorp, Quest and similar mainstream labs.

My result? The iGenex testing indicated I have Lyme.

I’ve since found out my story is common among Lyme sufferers. I’ve lost count of the number of people who have told me they were diagnosed with fibromyalgia and later found out they have Lyme. Based on my own research, I suspect thousands – maybe even millions – of fibro sufferers around the world have Lyme and don’t know it.

That’s tragic when you consider that Lyme is treatable. Yes, it’s extremely difficult to treat, but some people do recover and get their lives back. In contrast, recovery stories are extremely rare in the fibro community.

Since my Lyme diagnosis, I’ve made it one of my missions to educate the fibro community on the link between fibromyalgia and Lyme. Below, I’ll share some of the common misconceptions about Lyme, along with helpful information on how to get properly tested and evaluated.

Myth 1: I was tested for Lyme disease, so there’s no way I have it.

As mentioned above, the testing used by most labs is only 50-60 percent accurate. The primary reason for this is because the standard testing isn’t actually looking for the presence of Lyme bacteria. Instead, it’s looking for antibodies, which the body develops when it detects the Lyme bacteria.

Many cases of Lyme are missed because it can take weeks for those antibodies to form, so if you were tested too early in the disease process, then you’ll have a negative test result. (Some people never develop the antibodies at all due to a poorly functioning immune system.)

The antibody tests also fail those who have long-term exposure to Lyme. As the Lyme bacteria invades the body, it suppresses the immune system, and the body stops making antibodies against the bacteria. If you were exposed to Lyme years ago, the chance of it showing up on an antibody test is very slim.

Myth 2: I don’t have Lyme because I’ve never been bitten by a tick.

Only 30 percent of Lyme sufferers remember a tick bite. Ticks can be smaller than the size of a poppy seed. They also tend to migrate to out-of-the-way places, like the scalp, belly button or groin, so they are easy to miss.

Myth 3: I don’t live in the northeast, so I couldn’t have Lyme.

Lyme is found in every state in the United States. When a doctor says, “We don’t have Lyme in [insert your state name here],” he or she is just plain wrong.

Lyme is more common in some states than others. The most endemic areas include the northeast and mid-Atlantic (from Maine to Virginia), the north central states (mostly Wisconsin and Minnesota) and the west coast (particularly northern California).

Myth 4: I live in the city or suburbs, so there’s no way I have Lyme.

Ticks do not recognize arbitrary borders like city limits. If you have birds, deer, mice or any other sort of wildlife in your area, then there are ticks there as well.

You don’t have to be an outdoorsy person to contract Lyme. Lyme also lives in seemingly safe places, like city parks.

Myth 5: I don’t have Lyme because I’ve never had a bullseye rash.

Not everyone who contracts Lyme develops a bullseye rash. Estimates vary depending on the study, but on average only around half of patients ever have a bullseye rash.

Myth 6: I don’t have flu-like symptoms, so I don’t have Lyme.

Flu-like symptoms are common in the early stages of Lyme, but some people are completely asymptomatic.

As Lyme takes hold in the body, the symptoms become much more complex and diverse. The most common symptoms of chronic Lyme infection are extreme fatigue, joint/muscle pain, cognitive impairment, numbness/tingling (particularly in the extremities), depression/anxiety, digestive problems, neurological issues (tremors, bell’s palsy, etc.) and changes in vision/hearing.

Do those symptoms sound familiar? They should because many of them are also symptoms of fibromyalgia.

Reading a list of Lyme symptoms, it’s easy to understand why Lyme and fibromyalgia could be confused for one another. There is so much overlap in symptoms!

If caught early, Lyme is usually treatable with two-to-four weeks of antibiotics. However, if left untreated, Lyme can develop into a debilitating chronic condition that’s extremely difficult to treat.

Co-infections further complicate Lyme treatment. When a tick bites, it not only transmits Lyme but other infections as well. The most common are bartonella, babesia and mycoplasma. Co-infections can be just as hard – if not harder – to treat than Lyme.

How to get properly tested and evaluated

Some Lyme specialists do recommend having the standard testing as a first step toward being evaluated for Lyme. Health insurance companies usually cover this testing, so it’s easy to access and affordable.

The standard testing does detect Lyme in some cases. If you fall into that group, you’re lucky because it means you’ll be able to forgo more expensive testing.

But for most people, getting properly tested will mean paying out of pocket. iGenex is currently the gold standard for testing in the Lyme community because it tests for more strains of the bacteria than the standard testing. The basic Lyme panel costs around $300. Yes, I know that’s steep, but, in my opinion, it is worth every dollar to get the right diagnosis.

Test kits can be ordered directly from iGenex, and the blood can be drawn at your doctor’s office.

Beyond testing, your primary-care physician or other fibromyalgia doctor is probably not going to be of much help when it comes to diagnosing and treating Lyme. They just aren’t educated enough on the complexities of Lyme.

To get properly evaluated and treated, you’ll want to seek out a Lyme specialist, also known as a Lyme-literate medical doctor (LLMD).

The easiest way to find an LLMD is to seek out a recommendation from your nearest Lyme disease association. LymeDiseaseAssociation.org and ILADS.org also have doctor-referral services on their websites.

LLMDs typically use a combination of testing and clinical expertise to diagnose Lyme.

The bad news is that most LLMDs do not accept health insurance. Because Lyme is so complex, practitioners may spend an hour or more per appointment with each patient. Under our current medical model, there’s no way they could survive financially on insurance reimbursements.

Treating and beating Lyme

Treatment is one of the most controversial aspects of Lyme. Some LLMDs rely on the long-term use of antibiotics. Others use herbal protocols. Some combine the two.

Then, there are more alternative treatments, like ozone therapy, stem-cell transplants and RIFE machines.

The bottom line is, like fibromyalgia, there’s no tried-and-true treatment for chronic Lyme. It’s extremely challenging to banish because Lyme is the smartest bacteria on Earth. They use their corkscrew shape to burrow deeply into the body’s tissues where antibiotics can never reach. They can change their shape and form, so they’re invisible to the body’s immune system and protected from antibiotics and herbs. They will go into hiding while you’re treating with antibiotics and/or herbs, and when you stop treatment, they’ll come back out and begin causing havoc again.

Like fibromyalgia, there is no cure for chronic Lyme, but remission is possible. Some people do recover and go on to lead fairly normal lives.

That’s my greatest hope for myself and for everyone diagnosed with Lyme.

BetterHealthGuy.com – I have learned so much from Lyme warrior Scott Forsgren’s (aka the Better Health Guy) articles and podcasts. In my opinion, his site is one of the best Lyme resources on the Internet.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.